Hi all, i have recently been experiencing intense muscle pain in my shoulders and pelvic griddle area, along with systematic symptoms of malaise and low grade temperatures. Although i am only in my forties, there is a strong suspicion that is is PMR. Unfortunately i have another autoimmune disease which makes the diagnosis slighty difficult as my sed rate and crp inflammation markers are always high.
I have read quite a few scientific articles about hypothesis on the cause of PMR / GCA and it seems there are quite a few theories being put forth.
One being that it's a virus triggered disease and that aging may increass susceptibility to viral infections thus why it presents in older adults.
Could somone please explain what the general consensus is on this matter.
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Lucyscure
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Ahh, the good old 64 million dollar question -no one really knows - sure you’ve read all these -
“The cause of polymyalgia rheumatica (PMR) is unknown, although genetic and environmental factors are thought to contribute to disease susceptibility and severity .
It is best understood as a syndrome that is associated with synovitis of proximal large joints, tenosynovitis, and bursitis .
Risk factors for PMR include:
Older age — the incidence of PMR increases progressively with age in both men and women.
The highest incidence is in people older than 65 years of age, with a peak in the 70–80 year age group.
It is seldom diagnosed in people younger than 50 years of age.
Female gender — PMR is more common in women than men. Over 65% of people who have PMR are women, and the lifetime risk for developing PMR is estimated at 2.4% for women and 1.7% for men.
Northern European ancestry — PMR is most common in people of Northern European ancestry, with an incidence of 41–113 cases per 100,000 persons and a prevalence of about 6 cases per 1000 persons in those older than 50 years.
It is uncommon in people of Middle Eastern, Asian, African, and Hispanic descent,
Infection — cyclic fluctuations and peaks in incidence have been observed in the winter and associated with epidemics of mycoplasma, chlamydia pneumonia, and parvovirus B19 infections “ .
Many on here have suggested vaccines (of any variety), trauma, stress have all triggered their illnesses. Everyone will probably give you a slightly different answer -and yes if you have one autoimmune disease you are probably more likely to succumb to another, and being in your 40s does not mean it can’t be PMR
Thank you so much for your prompt reply and for taking the time to post such a detailed explanation into the probable causes of PMR. It's really rather daunting dealing with this possible diagnosis as well as other medical issues, but it is so comforting to know there are others like yourself who have gone through this baptism of fire and who have managed to become ambassadors of hope for the newly diagnosed.
It is interesting that it's mostly though not exclusively women who get PMR/GCA, though it is a common occurrence in most autoimmune diseases.
I didn't know that it's associated with 'synovitis of the large joints, tenosynovitis, and bursitis.' Would a ultrasound scan confirm the diagnosis if this is present?
Again thank you for the reply and i hope all is good with you.
Don’t think I can blame that, I had hysterectomy aged 37, succumbed to GCA aged 63…… 😳..fine in between, .. although did have overactive thyroid detected early (thanks to switched on mother) and successfully treated aged 18.
Hello 123-go, and thank you for your reply. Yes having a PMR diagnosis and an existing autoimmune disease is rather overwhelming to say the least! However, it is wonderful to know that this forum exists, with exceptionally knowledgeable and kind people such as yourself.I will have a look at that link i'm sure it will be very informative and useful.
I am so sorry you might have PMR/GCA. The inflammation markers are not necessarily the way of diagnosing PMR as some people do not have raised markers at all even. It is the symptoms that really finalise the diagnosis after discounting everything else that it could be. I reckon it was extreme stress caused by the NHS pension fund that brought on my PMR!!
Hi piglette, and thanks for the reply. I will definitely inform my doctor of this as she is of the opinion that a diagnosis is only made on raised inflammatory markers. I'm sorry to hear that extreme stress was the trigger for the immune system activation and subsequent productions of inflammatory cytokines. I hope are doing well now.
I am amazed sometimes at how little a lot of doctors know!! They reckon that up to 20% of patients do not have raised inflammation markers. I am the opposite mine are always incredibly high.
To be honest, i stopped being surprised at doctors lack of knowledge a long time ago. I don't wish to bore you with a long extensive list of my ailments but one of them is pancreatitis. During one very horribly painful episode of acute pancreatitis i was hospitalised and the usual protocol is nil by mouth until the inflammation goes down. However i was told by a senior gastrointestinal consultant that i needed to eat something, to which i replied that this was not the usual protocol and thankfully a nurse agreed with me. If i had of followed his advice i could of ended up in ICU or worse!
Have you been evaluated for EDS? Ehlers Danlos Syndrome? My daughter almost died from pancreatitis and it was EDS related. I feel for you, it's very rough.
I'm so sorry to hear your daughter went through a life threatening episode of pancreatitis. It's truly a horrific condition and hope your daughter is much better now. In answer to your question no I haven't been evaluated for Ehlers Danlos Syndrome, but thanks for the letting know that the two conditions are related i will definitely do some research on it. My pancreatitis is idiopathic in that they aren't sure why it happened, so that is another possibility to explore.
I totally agree...my General Practitioner and the rest seem to follow blood work exclusively...it's like they follow the narrative, there are numbers and the chart says cholesterol is higher than normal so take this....high AC1, take this pill, and so on.....
There seems to be no diagnosis, investigative work....but it's probably due to not enough doctors, money and too many patients....
Easy tick off list!! Woe betide you if you are one of the 20% who do not have raised inflammation markers. My GP goes on about bisphosphonates which are on his tick off list, even though by Dexascan score is over plus 2.
I do have high inflammation markers, that's why the diet and been weaned up and down prednisone three times.....the lowest I can get is 30 mg. I am waiting for the next blood work, will be interesting....haven't had blood work in a while due to insurance coverage.
It is a waste of time me having blood work done as my doctor says everything is satisfactory even though I have very high inflammation markers. He says it is just me!!
The general consensus is that something eventually triggers a malfunction in the immune system and it goes haywire, unable to recognise body as self and it starts attacking body tissues in error.
But that final straw comes after a lifetime of insults to the immune system - environmental, chemical (additives, drugs, all sorts of things), stress of all sorts, illness, injury, emotional, physical, work. Then there is a genetic component that makes it more likely to happen (possibly Scandinavian genes), aging and probably some unknown factors.
Hello PMRpro, thanks for the reply. It would seem there is many variables that go into creating a perfect storm within the immune system, causing it to attack its own tissues. Have they( the scientists/ researchers), ever found any specific antibodies?
Interesting about the Scandinavian genes. All my ancestry is Celtic, but someone, somewhere might have been Scandinavian as I have Pseudo Exfoliation Syndrome in my left eye. The consultant at the Eye Clinic said ‘had I any Vikings in the family!’ No I said!! It’s more prevalent in Scandinavia! All my family have been free! Typical. 🙄
They certainly were an intrepid lot! Thank you! It’s really fascinating! My eye consultant is Greek and he said PEX was prevalent there too! My GP had never heard of it. and he’s a bright bloke I would have thought. I think like PMR, nobody really knows the cause of it. Ageing is mentioned and Uveitis I think. Unpleasant, as it leads to glaucoma & with Pred it’s a double whammy. It’s partially dislocated the intraocular lens and will have to have a pars planta vitrectomy. Walking causes glare and eye wobbles - all good fun. 🙂
Yes free at the wonderful Eye Clinic here. Lovely surgeon. Gentle and kind and very high powered. He quoted me £5k (as a matter of interest done privately) … all the medical equipment would have to be taken to the Nuffield. 😅 When it will be done is another matter! Not long he thought!
They’re horrid actually. Especially when one crosses an unfamiliar road… it’s a bit disorientating to put it mildly. Wearing dark glasses helps, only I feel as though people assume I’m a neurotic when there’s no sun!! 😂. Also I look at ground as it protects me from feeling dizzy with it. When one is in familiar surroundings or in bed it’s quiescent … life!
Very much NOT - there is a glare to the left of the LEFT eye where the IOL has partially dislocated. The PEX and Pred have damaged the optic nerve to a moderate degree - but the right eye is fingers crossed ok. Vision good in right eye and optic nerve good. Sight in left eye down, but Dorzolamide/ Timolol eye drops keep the IOP down to normal. I would say similar to a cataract eye.. I can expect better vision with that eye post op.
Thank you PMRpro - so do I! The condition makes one feel more vulnerable in unfamiliar surroundings as I mentioned. However, on a more positive note .. I’m happy to say that the MTX is actually working magically on me. I feel as though I’m beginning to be my old self again. Having the deathly fatigue for the last two months has been a bit hellish and the PEX eye as well made me feel very antisocial and down in dumps. Am seeing Rheumy next week. Don’t know what he’ll suggest.
My take agrees with PMRPro below who mentions " ... a lifetime of insults to the immune system ...."
Although the causes are unknown my research leads me to believe this is mainly a lifestyle condition caused by a combination of inadequacies of diet (plus anything else that we put into the body including vaccines), sleep, exercise, stress (emotional and physical) and environment. ie my body did not like my lifestyle and finally said "Stop!"
Looking back I can see that for many years I didn't get enough sleep, had a less then healthy diet, had a stressful home life and an adrenalin fuelled, stressful, albeit thoroughly enjoyable, work life.
In an attempt to address those "insults to the immune system" I have made adjustments these 5 lifestyle factors. I can't measure how these changes are benefiting me but I feel confident that I'm making an effort, listening to the body and taking more responsibility for my health.
Hi, I know this isn’t an answer to your question but just to let you know, as I reported here last month, I am currently participating in a research programme in U.K. looking into the causes of GCA/PMR…..so maybe one day we’ll know!! For me, my only thoughts as to why I contracted the condition are that it was after the death of my father & a particularly tiring trip abroad!
Hi Lyndaki, apologies for the delay in replying, unfortunately i've had an awful week pain wise and having difficulties with my doctor and differential diagnosis!! Long story which i will go into in another thread. That's really fascinating that you're taking part in research that is focusing on the possible causes of GCA/PMR. It seems that GCA/PMR, like many other autoimmune diseases is a medical mystery that has many possible causes. Moreover, it is very encouraging to know such a research programme is happening and that the results could potentially help to create not only a better understanding of the immunological processes but also a potential cure in the future. Imagine how amazing that would be, to know your participation in such a study lead to uncovering a potential cure.
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